Sunday, May 20, 2007

Defining A Life (part one)

Several folks have asked me to write more about Son17 and his special needs. And I think it might be good for me to write about it. So please bear with me as I try to share my thoughts and some of our experiences in having a kid with special needs.

First of all, let me say that every kid and every family is unique. I'm not making any attempt to define a disability nor give advice on how families should deal with it. We all have our successes and failures in parenting and that is no different when dealing with a kid with special needs.

So let's begin with the obvious question - what is his special need?

Son17 was first diagnosed with ADHD (Attention Deficit Hyperactive Disorder). And trust me, he scored off the charts on the hyperactive part! But that was just the beginning. A few years later, as it was obvious there was more going on, his diagnosis was temporarily changed to PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified). In other words, there was a lot going on but no one knew what. Eventually, that label was dropped. We returned to ADHD and added the diagnosis of Asperger's Syndrome. Eventually the doctors identified two more disorders - Obsessive Compulsive Disorder and Anxiety Disorder. And that is where we stand today - four disabilities all mixed together.

If you think that adding a new diagnosis is just like adding 1+1, then you would be underestimating the combined impact. An additional disability is more of a multiplication problem than an addition problem. Just imagine for a moment, a person with an obsessive, compulsive need to do something. The inability to do whatever they are driven to do can be extremely upsetting. Now combine that with the anxiety disorder. The degree of anxiety about not completing the task skyrockets. When he was younger, we watched Son17 scream and tantrum for hours simply because he could not get his action figure to stand up on the uneven part of the carpet. No amount of soothing or redirection or intervention would help. He would immediately return to the source of the frustration and anxiety. And he would repeat that process over and over, sometimes for days or even weeks, until the compulsive need to stand that toy up suddenly went away and would be replaced by a different driving interest.

What else has this jumble of disabilities brought into your lives?

For almost two years the only thing in his room was a mattress and a pillow. His hyperactive bursts of climbing furniture without the ability to make any judgments about safety, combined with his destructive tantrums turned all furniture into either a safety hazard or a weapon of destruction. It was simply safer to leave the room bare.

As he grew older and stronger, there were the doors broken by repetitive opening and closing or simply by being slammed. Holes punched in walls during tantrums fueled by fits of frustration and anxiety.

It was impossible to get babysitters once Son17 was old enough to do damage. For seven years, my wife and I never went anywhere alone together. One or both of us was always with him when he wasn't in school.

And his drive to do things combined with the lack of social judgment created problems in school from the very first year. In kindergarten, a curriculum was used to teach the letters of the alphabet called The Letter People. Each week a different Letter Person was introduced - from Ms. A with the Achoo sneeze all the way to Mr. Z with the Zipping Zippers. There was a picture of the Letter Person to color on Monday. A song to learn on Tuesday. And other fun aspects of the curriculum that Son17 just adored. He could barely wait till each Monday rolled around to meet the next Letter Person. Eventually, the wait became intolerable and he pilfered the entire curriculum from the teacher's desk. This was a first year teacher and she was horrified that this cute little kid would just steal things from her desk! Of course, Son17 saw nothing wrong with what he had done. He just kept telling us - "I had to see who was coming next". While we sympathized with the teacher and tried to explain to Son17 why this was wrong, we also had a great laugh over the whole thing in private.

But these snapshots don't tell you who Son17 really is. Those are just a few glimpses into some of the struggles in his life. But he can also be extremely charming and funny. He is more inquisitive than either of our other kids. He was reading and comprehending at a tenth grade level before leaving the fourth grade. He can be extremely compassionate and is easily upset when he sees other kids being teased or bullied - especially if the victim is another kid with a disability. And last spring he stood in front of our entire church congregation and shared his thoughts on spirituality, the environment, and his struggle to figure out "how normal do I have to be?"

The current movement among special needs advocates is to always identify the person first and the disability second. For example, a person with autism, not an autistic person. This language is intended to change other's view of people with special needs. And I'm sure that is a good thing. But we already know he is more than just his disabilities. The diagnostic labels, the test scores, the psychiatric evaluations and these few anecdotes do not make a person.

And yet, these disabilities will no doubt have the greatest influence in his life. For much of his life, he has been and will be defined more by what he can't do, than what he can.

And our entire family has adjusted to compensate for his needs and his deficits in more ways than we even recognize. We never decide to spontaneously jump in the car and go for a burger. He needs advanced notice. We didn't take vacations or stay in hotels for over ten years because his volatile behavior made that impossible. And anyone visiting our home would certainly wonder about the Lego's carefully arranged in the middle of the table during mealtime, the piles of books in odd places, or the plethora of "bouncy balls" - hard rubber balls that Son17 keeps all over the house as a tool to manipulate when he feels particularly hyper. But we barely notice these things any more.

For those of you patient enough to read this far, you still don't know Son17 any better than you would know someone else if you only had a few brief anecdotes from which to learn. This feels much like the parable of the five men who were blindfolded and led to touch different parts of the elephant. Each described what he was touching but no one described an elephant. And I feel like I've blindfolded you and you only got to touch the trunk. Defining a life is not easy.

I gave a presentation to some special education teachers a couple of years ago about being the parent of a child with special needs. One person asked me to summarize the experience in one word. That word would be "more". More doctors appointments. More teacher meetings. More mess in our house. More limitations on what we can do as a family. More medications. More specialists. More time alone because even our families, while somewhat understanding and sympathic, do not understand the disabilities and find it difficult to offer much help. More challenges for long term planning and long term care.

Despite the issues we have with DD and whatever-it-is her issues are, I simply cannot imagine the struggles & trials, the breakthroughs & accomplishments you & your wife & children have been through & witnessed. From what you say here, it sounds as though you're doing a fabulous job as a dad. Congratulations on raising 3 fantastic children.

having very personal experience with ADHD,obsessive complusive and anxiety disorder as well as schizophrenia, I can relate to the "more".life is a set of extreams for the most part but when there is a lull, you get to reap the wonder of the incredible person that lies within. great post, thanks for sharing.

More, a very apt description, and family events of the last seven years, although certainly not the same has served to give me some limited insight into dealing with family members with these kinds of issues.I am so glad he has you and your family.

Wow, that's gotta be tough. My son has been diagnosed with Asperger's, but he's nowhere near that extreme. I can't believe there's actually something called Pervasive Developmental Disorder - Not Otherwise Specified. That just tells you how much they don't know about this stuff yet.

You are such an amazing dad. THe love you have for him shines through everything you have written. Your son sounds like a great guy. Everyone has their own challenges to overcome, and it sounds like even though you all have "more", you make it work for all of you.

Wow you must be exhausted. That's a lot to handle. I hope you are coping with it and making the best of it. I do hate the misdiagnosis part that doctors do so I now take everything into consideration but make the final determination myself. Best of luck to you,

Wow. Thank you so much for sharing this and giving us just a small glimpse of Son17 and your family dynamics. I had no idea. I love that he's Son17 first and foremost. You have a truly awesome family. But then I guess you already knew that.

Em....what you said....I can feel the love coming through. You love your son, and want what's best for him. You want people to know HIM not his disability...and now we do know just a little more about him. I am sure he's a wonderful guy and will become a wonderful man...like his dad.

You write with such humor and warmth about you son that it is easy to lose sight of the profound impact (negative and positive)those sorts of disabilities have on the entire family. Disorders often seem to come in clusters and in a way it makes sense that ADHD and the PDDs (both lending themselves to feeling out of control) would be accompanied by anxiety disorders. Even OCD, an anxiety disorder where coping mechanisms have gone wrong, makes sense. Thanks so much for sharing that portrait, including what you treasure about him.

You seem to have a wonderful family and a lovely son Em. What really touched me was his innocent question of "how normal do I have to be?"

I understand it must be frustrating for him not feeling he fits in, but that is a feeling everyone has, it’s just the depth of it that varys. But as long as he has people around him like you who loves him and lets him grow into being the best person he can be, letting him make his mistakes so that he can learn, he’ll do just fine. Actually, more then that, he’ll do great.

Thanks for writing and posting this. You help our understanding immensely. Over the years I have known numerous families that had one or more members with special needs. They always seem to be towers of strength, made stronger by the "more" factor, I suppose. You demonstrate a remarkable level of straightforward loving and caring that is made all the more remarkable considering that from time to time you must be tested to the limits.

I have the utmost respect for you as a parent. I know this story is meant to be about your son but, as a parent, I sat here thinking, how the hell would I deal with something like this? Are things any easier now that he is older? Perhaps not, maybe they are just different, as any other phase of parenting.

I can imagine this whole experience has produced a mix of emotions, as to how you feel about the situation.

I tip my hat to you and say your son is extremely lucky to have you and your wife as parents. Not all would step up to the plate as you have.

No matter what I think to write seems foolish and trivial after reading your wonderful post, so I go to my trusty dictionary.

Special: 1. distinguished by some unusual quality; esp.: being in some way superior 2. held in particular esteem (a ~ friend) 3. readily distinguishable from others in the same category 4. being other than the usual 5. designed for a particular purpose or occasion.

My husband's family contains a number of children with varying degrees of Asperger's, so I've experienced (from a distance) some of what you live with. Bless you all, and may you always have the strength and perspective to find the occasional bit of humor to lighten your anguish. Yours is a tough row to hoe.

That said, Son17 sounds like he has both sides of the Asperger's coin: the frustrations and limitations of walking (or maybe crashing, smashing and screaming) to the beat of his own drummer in a world that demands too much conformity, and the brilliance of mind so often characteristic of people with Asperger's.

I love the story of the Letter People. Our world would be such a better place if society held "the different ones" in high esteem. Son17 (and other kids like him) have lessons to teach us. And you, Dad (and Mom too), have my utmost respect and admiration.

Wow. I felt like I was reading a lot about my 13 year old son son here. Though he doesn't have aspergers or OCD....SO many of the other things you talked about....I've dealt with !!

But these snapshots don't tell you who Son17 really is. Those are just a few glimpses into some of the struggles in his life. But he can also be extremely charming and funny. He is more inquisitive than either of our other kids. He was reading and comprehending at a tenth grade level before leaving the fourth grade. He can be extremely compassionate and is easily upset when he sees other kids being teased or bullied - especially if the victim is another kid with a disability. I always think it is so sad that other other kids, and even adults, cannot see past any disability and see this part of the child. Always the negatives....always.

Hi - I found you through Meno. I thank you for your candor as I may (or may not... it's still early) be dealing with a child with some special needs. Not as extreme as yours, but different than the average kid. Maybe. My point: I am just going to do the best I can. I look forward to reading more of your blog.

god, what a post.i have a dear friend who has a 17 year old who has a totally different diagnosis (and one even...more). he's antisocial, diabetic, epileptic, OCD and ADHD. she has spent the past 17 years of her life trying to make sense of it all. to love him through the mountains of papers, pills, broken things and heartaches. what a perfect post. i am going to send it to her. she will relate.peace.lisa

I don't even know where to begin. I just finished reading Parts I-3 in reverse order and the tears are running down my face. Your love for your son is so palpable. Reading these posts made me feel like I was gazing into a crystal ball and getting a glimpse of my son's future.

I know that you must get a ton of recommendations on books and treatments (we've got a super stong-willed, highly allergic late talker, so we get that kind of stuff all the time). I just picked up a new book that deals with Autism, ADHD, Asthma and Allergies and these doctors have eliminated many or most of the symptoms of many children like Son17.

Again, I'm sure that you get this stuff all the time, but feel free to e-mail me if you want to know more about it.